Daegan's chance to see

EAST PRAIRIE, Mo. -- Paige and Jason Archie don't have to reinvent the wheel in their quest to help their son Daegan see. Dawn Barlett and her daughter Rylea already did that.

Like Daegan, 6-year-old Rylea was born with optic-nerve hypoplasia. Because her optic nerves did not develop normally during pregnancy, she was blind and could not detect light. Like Daegan, Rylea was given no hope of ever seeing. But in July, 10 days after Chinese doctors transplanted stem cells into her spine, the Webb City, Mo., girl began responding to a light.

Last August, Rylea made out her mother's face for the first time. Doctors in China had told the family not to expect to see any change for three to six months. Rylea's eye doctor evaluated her vision at 20/400 and was astounded as anyone to see a patient with optic-nerve hypoplasia develop vision. "This is the first case ever -- since the Bible -- where someone's sight has been restored," he told the Joplin Globe.

Paige Archie called Dawn Barlett after reading an Associated Press story about Rylea in the Southeast Missourian. They spoke for hours. "I wanted to know everything," Paige said.

After talking to physicians, Paige and Jason became determined to give Daegan the same chance to see.

Daegan Archie relaxed on the living room floor while listening to demo songs on his keyboard Tuesday. The Archies hope that new stem-cell treatments available in China will help Daegan's blindness. (Kit Doyle)

That chance will cost $60,000.

They discovered the stem-cell injections will cost $20,000 and the hyperbaric oxygen therapy to help the nerve cells grow after Daegan returns home are another $26,000. The 27-hour plane trips to and from China and expenses in remote Hangzhou will account for the rest. Daegan's grandmother, June Maxey, began spearheading a fund drive.

Southeast Missourians have responded, particularly civic clubs in the East Prairie and New Madrid areas. So far they've raised enough money to pay for the injections.

The Archies didn't know anything was different about Daegan until he was 3 months old. Their family physician said he was not tracking objects, and a pediatric ophthalmologist determined that his optic nerve never fully developed. "They said there was no hope," said Paige, who is a nurse. "They said there was no cure."

One Cape Girardeau doctor, however, told them the only way Daegan could see is if they were able to regenerate nerves. But she told them that would not happen in the U.S. anytime soon.

The Archie family realized that Daegan was blind when he was about 3 months old. KIT DOYLE kdoyle@semissourian.com

Then Paige saw the newspaper story about Rylea. Daegan is two years younger than Rylea, which doctors said is an advantage. "They say the younger the better," Paige said. More information about the treatment program is available at stemcellschina.com.

Daegan loves Dolly Parton's voice and the programmed music that comes from his electronic keyboard. "Old McDonald Had a Farm" makes him smile. He is fond of swinging and trips in the family truck. "He likes to go for a ride and roll the window down and feel the wind," Jason said.

Three-year-old brother Jase is protective of Daegan, making sure his parents know when he is hungry or thirsty.

Daegan didn't walk until 18 months. His overall development is behind that of other 4-year-olds. The Archies think blindness is the reason.

'We really grew up'

Jason and Paige were just out of their teens when Daegan was born. "We really grew up," said Jason, a farmworker. They went through the same discovery process Dawn Barlett did in trying to find help for their son. Last year they visited the Alabama School for the Blind a number of times and were prepared to relocate to Talladega. But officials at the school said Daegan needed to develop more before he would be ready to attend. They are prepared to move to St. Louis to get specialized schooling for Daegan if the umbilical cord stem-cell transplants fail.

But the Archies and community and family members helping them aren't contemplating failure. They're selling "Daegan's Mission" T-shirts and pens and holding bake sales and raffles. A trust fund has been set up for him at Focus Bank's Southeast Missouri locations. In Cape Girardeau, Houch's Donuts on North Kingshighway is selling window decals to benefit Daegan.

The Web site daegansfightforsight.com provides information about the family's mission and will post journal entries from China. All four members of the family will be there from June 1 to 20.

Paige and Jason searched the Internet for children's names before deciding to christen their first-born Daegan. "We wanted something different, and by goodness we got it," Paige said, smiling at her son.

sblackwell@semissourian.com

335-6611, extension 137